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RMV
New Member


Date Joined Oct 2008
Total Posts : 18
   Posted 10/22/2008 4:26 PM (GMT -6)   
Hi All... This Lyme issue has taken over my entire Family life and Turned it Upside down. /after three months we have confirmed what it is and the Lyme Specialist prescribed Mepron & Zithro. Have this combo worked for you guys? if so in what time Frame? Lastly, How can one get ***istance for these meds?

janem
Regular Member


Date Joined Nov 2005
Total Posts : 423
   Posted 10/22/2008 4:37 PM (GMT -6)   

Sorry you are having such a hard time . We have all been through it ...and this board is a GREAT source of help to everyone.

The Mepron /Zith Combo is typically prescribed for Babesia and Lyme - I take it you have all been tested for co-infections.

Unfortunately it does take time to see results : expect to feel worse before you feel better ( see all the posts on Herx reactions ) but you can and will get there.

WRT Insurance or financial help for meds : my insurance was not so sympathetic to Lyme , but once I tested +ve for babesia , has never questioned coverage. I believe that if you reach out to some of the pharmaceutical manufacturers they have hardship programs. Finally - buying Mepron from Canada is much cheaper.

 

Hope this helps.


RMV
New Member


Date Joined Oct 2008
Total Posts : 18
   Posted 10/22/2008 5:06 PM (GMT -6)   
Hi... Thx for your response so quickly. What is the "Herx" reaction? I read that a few times, Some have had and some have not. The Co-Infection test should have happened but we have to re-visit early next week.  Thx again for the advice on the Assistance. Best

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 10/23/2008 5:46 AM (GMT -6)   

Hi RMV, welcome to the board!

I am sorry you and your family have Lyme.  How long have you been sick?  Mepron and Zithromax is prescribed for the co-infection Babesiosis, which is simliar to malaria.  What doses of each are you taking?  When did you start treatment?

Below is a Lyme symptom list.  You can have any combination of symptoms.  

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
 

It is very important to see a knowledgeable doctor.  Besides Lyme and Babesiosis, ticks can also transmit other infections including  two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.  Have you all been tested for these?

If you would like a doctor recommendation, you can email me at ko_@bellsouth.net   

Be aware of the Jarisch-Herxheimer Reaction (herx).  Often, when people who have Lyme take antibiotics their symptoms get worse or they get new ones.  When the antibiotics kill the bacteria, toxins are released making them feel worse.  It can be scary when it happens, but it is a sign the antibiotics are working.  Although this reaction can vary individually, many people experience this at the beginning of treatment and every three to four weeks.  

During treatment, it is good to document your symptoms daily.  One way to do this is to list the three main symptoms you have each day with a numerical rating of their severity from 1-10.  Over time when you review this, you can see when your herxes occur and how you are responding to the meds. 

Many drug manufacturers have patient assistance programs for people who are uninsured or whose insurance will not cover the meds.  These programs provide meds at low or no cost.  Google the meds you are taking and find out who manufactures them.  Go to their website and see if they have patient assistance programs or call to find out.

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.  He also lists diet, supplement, and exercise recommendations.  I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton MD.

Good luck with your treatment!


RMV
New Member


Date Joined Oct 2008
Total Posts : 18
   Posted 10/23/2008 7:32 AM (GMT -6)   
You guys are amazing. The Support in this Forum is Incredible. Thank you so much for taking the time to inform and educate those of us who are new at this and are absolutely Terrified. WE were camping in Riverhead, NY this past Summer and my wife is the only one diagnosed with Lyme. she has lost approx 20% of her body weight, besides the Palpitations, PVCs, night sweats, anxiety, Joint pains, loss of libido etc... I have experienced some anxiety issues and some palpitations and am awaiting results. Our two daughters will of course follow suit but are showing no signs of any infections thus far. Thank God for that. We're still in the stage of trying to afford the first stage of the Mepron 5ml 2x/day / Zith 250mg 2x/day combination. I wil try to contact the Manufacturers to inquire about any assistance that may be available. Best Regards to All.

Post Edited (RMV) : 10/23/2008 7:36:11 AM (GMT-6)


trytocancel
Regular Member


Date Joined Aug 2007
Total Posts : 263
   Posted 10/23/2008 9:08 AM (GMT -6)   
I have tried the mepron/zithro...only lasted 5 days on it bc really old symptoms came raging back and I just about lost my mind bc I was sory of doing wel before I started it. I am now doing one more month of diflucan and mentally preparing myself to go back on the mepron and zithro bc I really have heard great things about this drug combo. CURE UNKNOWN is a great book, and gives lots of info, and is available at most libraries. Good luck!

<FONT color=blue>*no dx until 6/2007- clinical dx at llmd with a mildly positive bart test

hypermobility syndrome</i> dx, finally one western blot that no one knew how to read, and a nice round of prednisone to finish me off
June-August...Ceftin
August - October ....Roecefin IV, 9.5 weeks
October - worse than ever, bedridden, new LLMD pulled IV
October - March 21...biaxin & plaquenil, (worked a miracle),climbed step first time in 14mos
Jan - March 21...tetracycline (on and off 4 times bc hard to tolerate)

March 21 - April 19....stopped all prescription drugs, best month yet

July & August: DIFLUCAN...more improvement

September: Zithro + Mepron


RMV
New Member


Date Joined Oct 2008
Total Posts : 18
   Posted 10/23/2008 10:18 AM (GMT -6)   
It appears that most people are trying out treatment after treatment. What works for one person may not for someone else. Unfortunate commonality is that thislasts for Years. Is there an end to any of this?

trytocancel
Regular Member


Date Joined Aug 2007
Total Posts : 263
   Posted 10/23/2008 10:45 AM (GMT -6)   
Yes, I believe there is an end. I know of many who have recovered after years misdiagnosed and years of treatment. Unfortunately, it is not a quick or easy road, and I think if you are very sick or it has been a long time undiagnosed, a year of treatment isn't long at all. There are too many unknowns, too many variables, too many things to address and get to, changes in treatment plans, only going as fast with treatments as your body can handle, dealing with yeast and toxins along with the infection.... The majority WILL get better, people have gotten back to 100% even. BUt unless you are living this disease, no one could ever comprehend what exactly DEALING with this disease entails. YOu have to fight for yourself the whole way, even though YOU are the sick one and should be the patient. I think it takes longer bc of that as well. Stress prevents the body from healing, and believe many months of treatment I had didn't work like they could have bc I was in a constant state of pain and panic, and up to my ears in research, questioning every last decision made by my doc. I still think this is one of my biggest problems. I have seen my recovery speed up, and I have gained ground in a low stress week, that I couldn't gain in months in my normal state. Think positive! Easier said than done, but people have beaten the even more impossible.

<FONT color=blue>*no dx until 6/2007- clinical dx at llmd with a mildly positive bart test

hypermobility syndrome</i> dx, finally one western blot that no one knew how to read, and a nice round of prednisone to finish me off
June-August...Ceftin
August - October ....Roecefin IV, 9.5 weeks
October - worse than ever, bedridden, new LLMD pulled IV
October - March 21...biaxin & plaquenil, (worked a miracle),climbed step first time in 14mos
Jan - March 21...tetracycline (on and off 4 times bc hard to tolerate)

March 21 - April 19....stopped all prescription drugs, best month yet

July & August: DIFLUCAN...more improvement

September: Zithro + Mepron

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